On the stretcher on my way to surgery on Saturday morning, I fought back tears. Throughout this entire ordeal, I kept my spirits exceedingly high. But as I was being wheeled down to the OR, I suddenly felt lonely and sad. I wished Aaron were there. Or Felix or Robby. The attendant was such a nice guy. He held my hand and told me that there were a lot of people who were going to take good care of me.
Sure enough, about a dozen people were in the pre-op room, all for me. They'd opened the place up for my surgery, no one else's. Part of my celebrity status as HBO team member, I guess. This had been evident since Thursday, with introductions to the head of the ER department and Dr. Fein, the head of nephrology, who followed me throughout my stay, making sure my dialysis supplies were replenished. Also the PR gal had seen me in the ER.
Surgery was uneventful. Most importantly, I didn't feel the tube going into me or coming out, the latter of which was a traumatic experience after bypass surgery in November.
I got out of surgery at about 11 a.m. but didn't return to my room until about 9 p.m.--10 hours in recovery. Most of that time I dozed. Around 4, much to my surprise, Robby appeared. Felix had called the hospital earlier in the day to see how I was. When he couldn't reach me, he called the front desk and was told I was in surgery. Felix then called Robby, hoping he would pick up. Robby saw Felix's name displayed or recognized the number and so he picked up. He felt being with me was a higher calling than strictly observing the sabbath. I'm so glad he did. So good to see him! We talked easily about family and religion and what else I don't recall. There was just an easy, friendly flow to the conversation.
At some point, Robby had to leave to attend synagogue. Robby is making every effort to adhere to six months of thrice-daily prayers to honor the passing of his father, something that is often quite difficult to do, as the prayers are supposed to be said with other believers, not as a solitary ritual. What a beautiful, loving thing to have your child remember you in this way, through these acts of dedication and faith. Before he left, he asked if he could kiss me. Well, golly, sure, I said, or something like that. A sweet, little kiss, just what is needed following surgery. A hand hold before and a kiss afterwards. Perfect.
When Robby returned, he told me something that really warmed my heart--and still does now. At some point in the service, or whatever the synagogue time is called, the rabbi went around and asked if there were any prayer requests. Robby said that if I were a Jew, the rabbi would say this is a prayer request for the healing of Heidi, daughter of Moses. But since I'm not, the rabbi said this is for Heidi, daughter of Noah, as everyone is a son or daughter of Noah. I never thought of it like that, but, yes, that's how we're all related, all connected to one another.
Wednesday, March 24, 2010
Didn't Move for 48 Hours
Except for being moved on and off the x-ray table, spreading my legs to allow for the insertion of a catheter to collect my urine, and flinching in my sleep, I did not move one inch in the next 48 hours.
People who have never taken pain medication think that they kill the pain. Not true. At best they dull it so that it's bearable. Even with IV morphine, I was still feeling it, so I didn't move.
The doctors were concerned that I had been taking blood thinners and that surgery is not supposed to proceed until five to seven days after the halting of blood thinners. This would put my earliest possible surgery date as Tuesday, March 16. Five days and five nights lying in the exact same position. I just didn't think I could do that. Already my butt was sweaty and itchy and sore.
For the remainder of Thursday and all day Friday, the cardiologist, surgical team, osteopaths, nephrologists, pharmacist, and others I know not who they were kept entering my room, asking me questions, trying to determine what to do with me.
From ER, I was taken to a shared room with a woman who was playing her TV when I arrived at 11:30 p.m. After an hour or so, I politely said, "Excuse me, ma'am, but could you please turn it down just a bit?" No response. A half hour after that, I said the same thing, just as sweetly. She shot back, "Are you white?" I asked her if that was a problem and added, "Ma'am, I asked you as politely and kindly as possible. It's just been a very hard day, and I'd like to get some sleep." To that she gave an even angrier reply, "Well, then turn off your light and go to sleep." I told her I'd broken my hip and I couldn't move to shut off the light or reach the call button. I shared a room with Miss Winston for the next four nights. Often her
TV was going all night long--often while she slept!
Back home, I would never have been given a shared room, and I told the nursing staff I needed a private room to do peritoneal dialysis. The environment is supposed to be squeaky clean with anyone in the room wearing a surgical mask during hook-up and capping off. I was told that was not possible.
The crew got permission to film in the x-ray room on Thursday and in my hospital room on Friday. They got some good shots of me wincing with pain, then bravely regrouping to smile. They also got me adamently saying that this incident shored up my resolve to continue to attempt to change the law for compensating donors, not just for my own sake but for all the tens of thousands who are dying for a kidney. This fracture shows how my time is running out, and I have to work even harder to see that a law that is preventing donations is changed.
Felix planned to wait around to see me through surgery, if it were to occur on Saturday or Sunday. Bill and Ken were returning Friday night to Toronto. I kept talking to Felix throughout Friday. It sure looked like the docs wanted to wait until Tuesday. In that case, Felix would leave and come back by Tuesday, as the crew did not want me to be alone in the hospital. I thought this was so sweet but that they should do what they needed to do, since I had a lot of experience facing things alone.
Robby was a sweetie too. He said that he would break the sabbath to be with me, if my surgery were going to be tomorrow, but that he'd have to know by sunset Friday. Otherwise, he wouldn't answer a phone call until Sunday.
At about 5:30 Friday evening, I was told I had a definite answer: Surgery would be Tuesday morning. I called Felix and Robby. Felix said Jay, the research assistant in Toronto, was working on getting a ticket for Aaron to come to New York. He said several times, "Are you sure I should go?" I insisted he not wait around until Tuesday, so he left with the rest of the crew to fly home. Robby began his seder meal.
The sun set, while a doctor I had never seen before talked with me. He said he was more concerned about me lying around for five days and the risk of blood clots than he was about operating with blood thinners in my system. He felt the surgery should be done as soon as possible. This one dissenting voice turned the whole bunch of doctors around. Surgery was rescheduled for the next morning, Saturday, the sabbath, the morning after the film crew returned to Toronto.
People who have never taken pain medication think that they kill the pain. Not true. At best they dull it so that it's bearable. Even with IV morphine, I was still feeling it, so I didn't move.
The doctors were concerned that I had been taking blood thinners and that surgery is not supposed to proceed until five to seven days after the halting of blood thinners. This would put my earliest possible surgery date as Tuesday, March 16. Five days and five nights lying in the exact same position. I just didn't think I could do that. Already my butt was sweaty and itchy and sore.
For the remainder of Thursday and all day Friday, the cardiologist, surgical team, osteopaths, nephrologists, pharmacist, and others I know not who they were kept entering my room, asking me questions, trying to determine what to do with me.
From ER, I was taken to a shared room with a woman who was playing her TV when I arrived at 11:30 p.m. After an hour or so, I politely said, "Excuse me, ma'am, but could you please turn it down just a bit?" No response. A half hour after that, I said the same thing, just as sweetly. She shot back, "Are you white?" I asked her if that was a problem and added, "Ma'am, I asked you as politely and kindly as possible. It's just been a very hard day, and I'd like to get some sleep." To that she gave an even angrier reply, "Well, then turn off your light and go to sleep." I told her I'd broken my hip and I couldn't move to shut off the light or reach the call button. I shared a room with Miss Winston for the next four nights. Often her
TV was going all night long--often while she slept!
Back home, I would never have been given a shared room, and I told the nursing staff I needed a private room to do peritoneal dialysis. The environment is supposed to be squeaky clean with anyone in the room wearing a surgical mask during hook-up and capping off. I was told that was not possible.
The crew got permission to film in the x-ray room on Thursday and in my hospital room on Friday. They got some good shots of me wincing with pain, then bravely regrouping to smile. They also got me adamently saying that this incident shored up my resolve to continue to attempt to change the law for compensating donors, not just for my own sake but for all the tens of thousands who are dying for a kidney. This fracture shows how my time is running out, and I have to work even harder to see that a law that is preventing donations is changed.
Felix planned to wait around to see me through surgery, if it were to occur on Saturday or Sunday. Bill and Ken were returning Friday night to Toronto. I kept talking to Felix throughout Friday. It sure looked like the docs wanted to wait until Tuesday. In that case, Felix would leave and come back by Tuesday, as the crew did not want me to be alone in the hospital. I thought this was so sweet but that they should do what they needed to do, since I had a lot of experience facing things alone.
Robby was a sweetie too. He said that he would break the sabbath to be with me, if my surgery were going to be tomorrow, but that he'd have to know by sunset Friday. Otherwise, he wouldn't answer a phone call until Sunday.
At about 5:30 Friday evening, I was told I had a definite answer: Surgery would be Tuesday morning. I called Felix and Robby. Felix said Jay, the research assistant in Toronto, was working on getting a ticket for Aaron to come to New York. He said several times, "Are you sure I should go?" I insisted he not wait around until Tuesday, so he left with the rest of the crew to fly home. Robby began his seder meal.
The sun set, while a doctor I had never seen before talked with me. He said he was more concerned about me lying around for five days and the risk of blood clots than he was about operating with blood thinners in my system. He felt the surgery should be done as soon as possible. This one dissenting voice turned the whole bunch of doctors around. Surgery was rescheduled for the next morning, Saturday, the sabbath, the morning after the film crew returned to Toronto.
Pride Cometh Before the Fall
On Wednesday, March 10, I arrived in New York City at the Wellington Hotel in Manhattan. The cab ride from the airport was on a freeway that did not offer many views. I did see some horse-drawn buggies lined up on the perimeter of Central Park, but that's about it. This will be important to remember, once you find out what transpired the following morning.
After settling in, I had tea with Bill, the director, and Felix, the producer. We went over the general plan for the following days. They wanted to film me hooking up to the dialysis machine and capping off from it, and Robby and me meeting with a lawyer to discuss a strategy for changing the law that prohibits compensating donors. They also wanted to film an interview of me while in a cab and stage my entry to the hotel with all my gear. Tomorrow morning they planned to film Robby filming his You Tube video on the immorality of not compensating donors. (Plot synopsis of Robby's video: People standing around a burning building, horrified that a young child is on the roof. Mother screaming for someone to rescue her child, to save his life. No one steps forward. She offers $1,000. A man steps forward, saying he'll do it. Another man gets in the first man's way, saying it's against the law to be compensated for saving someone's life. Hence the parallel with the prohibition against compensating kidney donors, who are also saving someone's life.)
That night, Bill, Felix, Robby, and I went out for Israeli food, similar to Lebanese, which I've had many times before. (Ken the cameraman was doing something else.) There was a hand-washing cubicle near our table for Orthodox Jews who wash before eating bread. Really enjoyed talking with these three intelligent men, brainstorming and feeling a part of the process.
A lot of fun to see how a documentary is made. It's certainly not just letting the camera roll.
My Baxter boxes had been delivered to Robby's apartment. The crew was amazed how much gear is required to keep me alive for six days.
The next morning, a local sound man met us at the hotel. During the cab ride to Brooklyn, where Robby was filming the YouTube piece, Bill interviewed me. The driver's GPS or dispatch kept interfering, so Bill had to ask the same questions up to four times, and I had to give the same impassioned answers up to four times. He said he'd snip it together so that it sounded right.
I spoke of how Robby was eager to work with me, as very few dialysis patients have as much energy and enthusiasm as I do. Most are very sick and very tired, many are depressed. "Dialysis patients are an invisible population," I said. "Unless you know someone on dialysis, you don't think about it. I want to do for kidney disease what was done for AIDS: Put a face on it. Dialysis is something that can happen to anyone, young or old. And with so many people overweight and obese in this country, many are bound to develop diabetes and hypertension, which are the two leading causes of end-stage renal disease."
Robby had said the same: I was chosen for this documentary because I am pretty, intelligent, and full of life. A perfect spokesperson. I felt good about my answers and my presence, and later the crew said I came off very well on camera.
I teased the crew: "Where's the hair and makeup gal? I was counting on her."
During the hour-long cab ride, I only had a few moments to look out the window; the rest of the time my eyes were on the interviewer. Remember this for later. Ken filmed me getting out of the cab and walking briskly down the street. Actually he filmed this three times.
For the next hour or so, I watched the filming on a street of beautiful brownstones. At one point, I leaned against a wrought-iron gate that I had thought was a fence. The gate gave way, and I fell onto a cement step. I was in a great deal of pain. Felix and Bill helped me to a stair so that I could sit down. Bill and Felix kept asking if I wanted to go to the ER, but I didn't want them to make a fuss. Bill figured that if I had broken anything, I'd be screaming, and since I wasn't, I should feel better soon.
When I attempted to stand, I could not, so Bill and Felix made a chair with their arms and carried me to the car. When they lifted me inside, I was on the verge of screaming. I was taken to an ER a few blocks away, where a bear of a paramedic said he'd have to get fresh with me in order to get me onto a stretcher. I put my arms around his neck and commenced screaming. Later I apologized for screaming in his ear. In typical New York fashion, he quipped, "That's OK. I've got another one."
Interesting side note: The paramedic's partner's photograph appeared in the NY Times the next day in an article about accidents caused by emergency response personnel.
The ER was absolutely crazy, like nothing I've ever seen anywhere but in a movie. All the curtained rooms were full, and stretchers were lined up as tight as possible in the aisles. Surprisingly, the personnel were some of the best I've ever seen. I received pain killers, which were much needed, as any movement set off sharp pangs. Felix stayed with me in the ER. I suggested he see if he could get permission to film in here. He insisted that we needed to focus on me, but he appreciated my concern for the film. I said that I have a video function on my camera, so after much insistence, he filmed and took a few still shots.
I absolutely knew, even in those moments of excruciating pain, that this would make for better film making, as it shows how vulnerable dialysis patients are. Many doctors told me over the next 12 days that, had I not been a dialysis patient, I would have fallen and been bruised, but that's it. Because of the brittle nature of dialysis patients' bones, however, my left hip was broken.
After settling in, I had tea with Bill, the director, and Felix, the producer. We went over the general plan for the following days. They wanted to film me hooking up to the dialysis machine and capping off from it, and Robby and me meeting with a lawyer to discuss a strategy for changing the law that prohibits compensating donors. They also wanted to film an interview of me while in a cab and stage my entry to the hotel with all my gear. Tomorrow morning they planned to film Robby filming his You Tube video on the immorality of not compensating donors. (Plot synopsis of Robby's video: People standing around a burning building, horrified that a young child is on the roof. Mother screaming for someone to rescue her child, to save his life. No one steps forward. She offers $1,000. A man steps forward, saying he'll do it. Another man gets in the first man's way, saying it's against the law to be compensated for saving someone's life. Hence the parallel with the prohibition against compensating kidney donors, who are also saving someone's life.)
That night, Bill, Felix, Robby, and I went out for Israeli food, similar to Lebanese, which I've had many times before. (Ken the cameraman was doing something else.) There was a hand-washing cubicle near our table for Orthodox Jews who wash before eating bread. Really enjoyed talking with these three intelligent men, brainstorming and feeling a part of the process.
A lot of fun to see how a documentary is made. It's certainly not just letting the camera roll.
My Baxter boxes had been delivered to Robby's apartment. The crew was amazed how much gear is required to keep me alive for six days.
The next morning, a local sound man met us at the hotel. During the cab ride to Brooklyn, where Robby was filming the YouTube piece, Bill interviewed me. The driver's GPS or dispatch kept interfering, so Bill had to ask the same questions up to four times, and I had to give the same impassioned answers up to four times. He said he'd snip it together so that it sounded right.
I spoke of how Robby was eager to work with me, as very few dialysis patients have as much energy and enthusiasm as I do. Most are very sick and very tired, many are depressed. "Dialysis patients are an invisible population," I said. "Unless you know someone on dialysis, you don't think about it. I want to do for kidney disease what was done for AIDS: Put a face on it. Dialysis is something that can happen to anyone, young or old. And with so many people overweight and obese in this country, many are bound to develop diabetes and hypertension, which are the two leading causes of end-stage renal disease."
Robby had said the same: I was chosen for this documentary because I am pretty, intelligent, and full of life. A perfect spokesperson. I felt good about my answers and my presence, and later the crew said I came off very well on camera.
I teased the crew: "Where's the hair and makeup gal? I was counting on her."
During the hour-long cab ride, I only had a few moments to look out the window; the rest of the time my eyes were on the interviewer. Remember this for later. Ken filmed me getting out of the cab and walking briskly down the street. Actually he filmed this three times.
For the next hour or so, I watched the filming on a street of beautiful brownstones. At one point, I leaned against a wrought-iron gate that I had thought was a fence. The gate gave way, and I fell onto a cement step. I was in a great deal of pain. Felix and Bill helped me to a stair so that I could sit down. Bill and Felix kept asking if I wanted to go to the ER, but I didn't want them to make a fuss. Bill figured that if I had broken anything, I'd be screaming, and since I wasn't, I should feel better soon.
When I attempted to stand, I could not, so Bill and Felix made a chair with their arms and carried me to the car. When they lifted me inside, I was on the verge of screaming. I was taken to an ER a few blocks away, where a bear of a paramedic said he'd have to get fresh with me in order to get me onto a stretcher. I put my arms around his neck and commenced screaming. Later I apologized for screaming in his ear. In typical New York fashion, he quipped, "That's OK. I've got another one."
Interesting side note: The paramedic's partner's photograph appeared in the NY Times the next day in an article about accidents caused by emergency response personnel.
The ER was absolutely crazy, like nothing I've ever seen anywhere but in a movie. All the curtained rooms were full, and stretchers were lined up as tight as possible in the aisles. Surprisingly, the personnel were some of the best I've ever seen. I received pain killers, which were much needed, as any movement set off sharp pangs. Felix stayed with me in the ER. I suggested he see if he could get permission to film in here. He insisted that we needed to focus on me, but he appreciated my concern for the film. I said that I have a video function on my camera, so after much insistence, he filmed and took a few still shots.
I absolutely knew, even in those moments of excruciating pain, that this would make for better film making, as it shows how vulnerable dialysis patients are. Many doctors told me over the next 12 days that, had I not been a dialysis patient, I would have fallen and been bruised, but that's it. Because of the brittle nature of dialysis patients' bones, however, my left hip was broken.
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